Life, Autism, Disability, and More

Winner, Winner, Grilled Cheese Dinner

simon on a couch

This has nothing to do with this blog. We just went and sat on furniture because he likes to, and I took this picture and liked it.

In under a month, Simon turns 15.

Horrifying, isn’t it?

He will be firmly in teenage-hood, and, come the fall, he’ll be in high school.

I meant terrifying, not horrifying.

But that’s the scary news. Now for the awesome news:

Simon explained why he was stimming and how he was feeling.

For those who don’t know what stimming is, or why you should not stop a person from doing it, here’s a quick explanation. Stimming (self-stimulating behavior) is what a number of people on the spectrum do. It’s what a lot of people might call “hand flapping,“ or it can be any number of other behaviors that help the person to calm themselves or express themselves. You shouldn’t stop it because, well, it’s a person calming themselves or expressing themselves. (Go read this now. And be prepared to cry.)

Back to the story…

We went out to Logan’s Steakhouse. They serve grilled cheese, a veggie plate, and steaks, so they meet all our requirements for going out. They even have free peanuts.

We were waiting for our meals to come out, and Simon was stimming. He was sitting in the corner of the booth, flapping his hands, and moving his head. And smiling.

“Why are you doing that?” I asked him, not actually expecting an answer, but asking because I always try anyway.

“I’m happy,” he said.

Wait. What? He said he was happy?

“Why are you happy?” I asked, pushing my luck.

He didn’t say anything for a minute. Just kept flapping and smiling.

“I like Logan’s,” he said.

Wow.

First off, I can know with some degree of certainty that he does actually know why he stims, and he’s doing it on purpose. Second, I know that he really does like going out to eat there. I was pretty sure of that second thing already since he asks to go whenever we go buy our comics – I have no idea why he has put that connection there, but he has, and it’s awful hard to say no when you’re tired and don’t feel like cooking.

So, the next time you think about telling a person who stims to stop it or to have “quiet hands,” shut up instead.

I felt sick

elopementLike a lot of people, I have my email come to my phone.

Yesterday morning, I checked it while I was getting up and discovered two that stopped me in my routine.

The first one was that a 12-year-old autistic boy was missing.

The second one was that the 12-year-old autistic boy was found “in the water.” (At the time I’m posting this, he was taken care of in the hospital because he was suffering from hypothermia. A sergeant saw his wet clothes and dry shoes at the shore, spotted him, and then went in to rescue him.)

But I didn’t know that he was still alive when I saw that headline.

I thought he, like so many other autistic kids who elope, was found dead in the water.

Dead.

And I felt sick.

Sick like someone had punched me in the stomach. Sick like I couldn’t breathe in and out anymore. Sick like I had to sit down for a minute with my head down.

It didn’t matter that it wasn’t my kid. It was a kid. It could have been my kid.

Last week, we had an incident at school.

There is some he said/she said going on, but I have faith in the version of the story I heard from the bus aide and the bus driver:

While were loading up a kid with a wheelchair onto the bus, the aide noticed Simon.standing alone. No one was near him. No one was watching him. No one seemed to notice him.

According to the aide (and the bus driver), he seemed confused and had begun wandering from the bus area towards the car rider line.

Not cool.

So not cool.

So not cool it’s dangerous.

They did spot him, and they did get him and put him on the bus.

Nothing bad happened.

But all it would have taken was a one or more people not paying attention, and Simon could have been in the ocean (metaphorically since we’re quite far from the ocean).

Wandering down the road isn’t much better. It’s a busy road, and if he had gone in one direction, he’d wind up near some woods. If he’d gone in the other direction, he’d be heading towards the main highway that goes from Galveston to Dallas and beyond.

Neither of those options are much better than the ocean. Neither of those options are safe. Neither of those options make my stomach feel good.

How does this end?

It doesn’t.

Simon’s teacher is instituting a few new policies to try to make sure it never happens again. But we’re human. It most likely will happen again, even if it’s not on her watch.

This is life with an autistic child.

The R-Word

Frog image by kconnors at morguefile(This blog got caught up in the massive storm that was too many things scheduled, so I wanted to finally get it up. Because it does matter.)

Back on March 1 (Spread the Word to End the Word), I was teaching a few creative writing classes. I’ve had, and I’ve worn, my t-shirt on that day for three years now.

Before each class, I told them that they were my captive audience, and that they had to listen to me get up on my soapbox.

I went into my spiel about spreading the word, tell them about the term ID, and asking them to check out the website and take the pledge.

In my second class of the night, I had a 14 year old student. When I told delivered my speech to him, he said. “Wow. Uh. I’ve said retarded like a dozen times so far today.”

Did I do that, too, when I was 14?

I don’t remember doing it, but, then again, I also don’t remember the time that I answered every test question with the word “frog.” (I apparently did that. One of my friends reminded me about it. I still don’t remember doing it, but it definitely sounds like something I would have done in high school)

I asked my student to think about it and check out the website. Maybe even share it around.

And I thought – what if this website, and this idea of respect for those with disabilities, had existed 30 years ago?

What if it’d seen something like it?

Would it have affected my word use?

My friends and their word use?

Will it affect him?

When I hear it in movies, I cringe every time. Doesn’t matter if it’s an old movie or a new movie. Doesn’t matter if it’s appropriate to the character’s personality.

I don’t know that we’ll ever be able to get rid of the stigma and the insult based on intellectual disabilities, but we can spread the word to end the word.

And maybe that will reduce the number of times I cringe when I read Facebook posts, watch movies, read books, or talk to strangers and acquaintances.

Grandparents should brag

horsebackNot too long ago, we decided to start getting regular babysitting, and we picked my father’s step-granddaughter.

She had seemed nice and responsible when we’d met her, but I figured I’d try to get some more info on her. So I called my father.

He talked about her and about her son. He went on and on about how awesome his step-great-grandson is. So smart! So clever! So talented! This little boy was the best little boy in the whole history of little boys!

I stopped my father.

“What do you brag about when you talk about Simon?”

“Um.”

Pause.

Serious pause.

Pregnant pause.

Too long a pause.

“Simon’s very special.”

Very special.

Wow.

He didn’t think to brag about Simon’s memory.

He didn’t think to brag about Simon’s smile.

He didn’t think to brag about how everyone who meets Simon loves him and remembers him for years afterward.

He didn’t think to brag about how much Simon likes to read (and how he taught himself to read).

He didn’t think to brag about how good Simon is at horseback riding, bowling, or baseball.

He didn’t think to brag about the how Simon taught himself to float and swim.

Clearly, there’s very little to brag about when it comes to his grandson.

Maybe I should make him a list.

Hit by the Obvious Hammer

CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=67932 I’m always railing about tolerance and support for individuals with autism and their families. So when I got hit by the obvious hammer last night, I felt like the stupidest person in the world.

Simon participates in Special Olympics bowling. He loves it. We love it. It’s awesome.

But two or three years ago, he was on a lane with a teenager who apparently had a few more issues than he did. The teenager first whipped out his penis and started stroking it. Not a big deal to me. Clearly, that was his thing. Okay. The aide with him told him to put it away, and he did.

I guess that bothered him, though, because when they were doing all the opening ceremonies, he reached out and smacked Simon on the top of the head.

Not a little gentle tap, either. A loud THWAP that must have hurt because Simon started crying and freaking out. Couldn’t blame him – a completely surprising smack on the head would probably make me cry and freak out, too.

The teenager was moved away, we comforted Simon, and it looked like the game was going to go on.

Something else happened with the teenager, though, and next thing we knew, he was pulled from the game and his parents were called to come pick him up.

And I thought horrible, horrible thoughts.

At the time, I didn’t think they were horrible thoughts. They were thoughts about defending my son. I was glad the teenager was tossed out. What is wrong with his parents? I thought. Why aren’t they here? Why aren’t they working with him more?

Time for the obvious hammer.

Really, Kate? I asked myself last night as I was thinking back on the bowling day. Really?

The parents (or other caregivers – I had and have no idea about his home life situation) might not have been there for any number of reasons, including the fact that maybe they were just reveling in some time off. No one wants to be a martyr, but it can be hard. It can be tiring. It can be one of those things where a few hours of time off makes all the difference in the world. Maybe they had to work to help pay for his therapy or even just their lives.

For all I knew, they had been working with him. They could have tried therapies, could have tried medications, could have tried psychological care. I didn’t know what they tried. I didn’t know what they had done. He could have been getting 50 hours a week of ABA, and it made no difference. I had no idea.

Why the hell was it okay for me to judge them?

Because, and here’s the super important thing, I DON’T GET TO JUDGE THEM. It doesn’t matter if they’ve done all or none of those things. I don’t need to make excuses. They don’t need to make excuses. Because, let me repeat it again, I DON’T GET TO JUDGE THEM.

It’s super easy to judge. It’s easy to forget that we don’t have that right. Easy to think that we know better, that we’d do better, that we’d be better. But, news flash from the obvious hammer, it’s not our business, and it’s not our right to judge them.

The sad part is how long it took me to realize that I’d been doing it in that situation. I had been proud that, while I tried to offer advice and help and experience, I hadn’t judged without knowing a situation. Fail.

Thanks, obvious hammer!

(To be fair, there are times when judgment is acceptable. A parent killing their child? Judged. A parent who abused their child? Judged. A parent who doesn’t care and neglects their child? Judged. That’s a whole different blog, though…)

The Sickness Has Spread!

simon at goodwillOkay, maybe it’s not a true sickness. But it’s one that I caught in my childhood, Patrick caught in his childhood, too. Now it’s Simon’s turn.

The sickness?

Book addiction.

I’ve been waiting for this day. I’ve been hoping for this day. I’ve been praying for this day.

And it’s finally come.

Simon has had favorite books before. Every night, he wants to read Goodnight, Moon. By now, everyone has that memorized. (In the great green room…)

We’ve been going to the library at least once a week, and he loves it, but he always tended to get the same books over and over. Board book, specifically. Simple ones, intended for toddlers.

I was fine with that. At least he had an interest in books. But there wasn’t much to them. A word or two a page with a picture.

Then it was summer, and we were bored. We started to go to thrift stores on a semi-regular basis.

He began getting books there. $1.00 here. $.50 there. His collection began to grow.

And then…

And then…we went to a thrift store, and he began getting cranky with me. I asked him what he wanted – normally that’s answered with the response of “a big hug!” – but that time he said, “books.”

We went over to the kid’s book area.

I searched the shelves, but I couldn’t find anything that he wanted. Then he reached in, almost randomly it seemed, and he pulled out an “Early Reader” Blue’s Clues book.

What.

The…

I had totally missed it, but he found it. I guess we don’t need to worry about him getting glasses anytime soon.

The minute he pulled it out, he opened it and began reading it. He read it all the way through. When I asked him if he wanted it, he said, “Yes.” Another irregular response – most of the time, he says “no” when asked if he wants things.

We went and bought it, and as soon as we got into the car, he said, “You can have your book when we get home.”

“Do you want it now?”

“Yes.”

I passed it into the backseat, and he immediately began reading it again.

The torch has been passed. We have a reader on our hands.

The bowling alley is cursed

bowlingIt’s the only logical explanation for the way the last two Mondays have rolled.

Two weeks ago, we tried bowling for the first time all summer.

It was a roaring success! Sort of. The person I’d hoped to meet up with there couldn’t make it. That’s cool. I hadn’t let her know in advance, so it was my bad.

Simon had an awesome time bowling, didn’t want to stop until we’d managed all three of our games that had been included with our summer pass, and didn’t need juice or cookies to help him make it through. Awesomeness.

But.

When we went to get ready and leave, it turned out that his handy dandy notebook, something that he can’t live without, had gone missing. Where, I don’t know. When, I don’t know. All I knew (and he knew) was that it had vanished.

My plans of hitting Starbucks and a thrift store on the way home also vanished. I knew we wouldn’t be able to do anything until we got a new notebook, which was sitting in the closet at home.

Cue a hurried drive home. Grabbing the notebook. Much rejoicing!

One week ago, we tried it for the second time.

I knew in advance that the person I’d wanted to see there wouldn’t make it, but that was okay – two other people (that I’d never met before) and their kids would be there. Massive panic attack. New people! New people! Alert! Alert! I almost didn’t go, but then I pushed through. It would be okay. Simon wanted to go, and I couldn’t let my anxiety get in the way of that. Right?

We went. The new people were cool. Simon had a great time, even if he did start getting distracted a bit during the second and third game. Anytime I asked him if he wanted to leave or keep bowling, though, he went and got a ball and bowled. Nice.

The weather was a bit crazy. It had just been raining when we got there, but about mid-way through our time, the guy on the PA system announced something about tornadoes and power going out and having to go to the bathroom to hide. Not that that bothered my anxiety. Nope. Not at all. Okay, let’s be honest. It powered the shit outta my anxiety. I soldiered on.

When we went to get ready and leave, no problems. Said good-bye. Swapped shoes. Went outside to find out that it had turned into a gentle drizzle. All good. Whew.

But.

This time, we made it all the way to the car before the curse reared its ugly head. I started the car, settled in, heard the ding. It’s been dinging for weeks now, telling me to get it an oil change. I tell it to shut up. This time it wasn’t only telling me to get an oil change. This time, a new light came on. The light that tells me that one of the tires was low.

Did that mean I had a flat? I hadn’t noticed it when I got in. I drove out of the parking lot slowly. Didn’t notice anything. I knew there was a tire with low air, though, and I knew that if it was low enough for the car to notice, it needed to be fixed.

I went into the first gas station I saw that had a sign for air. It wanted $1.50 in quarters. Quarters that I didn’t have.

I went into the second gas station I saw that had a sign for air. It also wanted $1.50, but it took credit cards. Hallelujah! I got out, swiped my car, and waited for the air to turn on. I wanted a really long time before I realized that the air wasn’t working.

Again, I’d been hoping to stop off at Starbucks. This time, I stopped. What was the worst that would happen? I’d blow a tire in the drive thru and block everyone? I could live with that. I needed that coffee.

I drove home slowly, annoying other drivers around me. We made it home safe, and I figured we’d put some air in the tire later. (Which turned out to be another long story involving a missing tire gauge and unsuccessfully guessing which tire needed air and how much.)

Now it’s almost time for bowling again.

I’m planning on going.

Let’s hope that curse is finished with us.